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Myelin Repair, Gut Bacteria, and When Does MS Begin?

At last week’s American Academy of Neurology’s Annual Meeting in Philadelphia, I was struck by the tremendous progress we’ve made in understanding and treating MS. We are closer now than we have ever been to ending MS forever. I’m sharing some of that progress here, and I invite readers to browse the scientific summaries (abstracts) for yourselves, and also check out my colleague’s blog from the AAN, "Explorations of Progressive MS Reported at AAN 2019."

Myelin Repair Trials: I was excited to see first results from a small, open label trial of a thyroid hormone mimic called liothyronine to see if it is safe and holds promise for promoting repair of nerve-insulating myelin, a main target of damage in MS. The study was led by Dr. Scott Newsome of Johns Hopkins University, who received a grant from the National MS Society to support this trial. He reported that it was generally well tolerated, with GI symptoms being the main side effect. This kind of small study isn’t designed to detect actual myelin repair, but the Hopkins team is now analyzing other outcomes to see whether they see hints that a phase 2 trial is warranted (abstract S56.003).

I also learned that two new phase 2 trials are expected to get underway to test the experimental therapy called elezanumab, which in lab models was able to promote repair of axons and myelin,and protect against damage. Results from a phase 1 trial were originally reported last fall at the ECTRIMS meeting. Elezanumab inhibits a molecule that plays a role in stopping the outgrowth of nerve endings during development. Typical for a phase 1 study, it was primarily focused on establishing safety. One of the planned phase 2 trials of this experimental therapy will involve people with progressive MS, and one will involve people with relapsing MS. Exciting news! (abstract S56.001).

Gut Bacteria: There were several presentations focusing on how the microbes that live in our intestines can control immune responses, and looking into differences between people with MS compared to people who don’t have MS. In her talk about gut bacteria and pediatric MS, Dr. Helen Tremlett of the University of British Columbia noted that only half of our body’s cells are human—the rest are microbes, and most of them reside in the gut.

Studies of gut bacteria—collectively called the microbiome—are getting very sophisticated. A team led by Dr. Phil De Jager of Columbia University looked at links between diet, gut microbiome and other factors in 93 people who have no symptoms, but who have close family members with MS. This team previously developed a “risk score” by weighing a person’s known risk factors (such as number of MS-related risk genes and environmental exposures like smoking). Participants gave stool samples and completed surveys about their diets. Among the team’s findings, participants who had the highest risk scores appeared to have fewer bacteria that produce short-chain fatty acids, which have been linked to calmer immune systems and may be protective against immune-mediated diseases. This is just one example of an unfolding story that may lead to approaches for stopping or preventing MS (abstract P4.2-056).

When Does MS Begin? This is a question that received a lot of attention at this year’s AAN, and I think it’s very pertinent to finding a cure. If you ask a person living with MS when their MS began, they may recall a long-ago unexplained symptom, like blurred vision or numbness, that went away after a couple of days. Last year Canadian researchers reported that people with MS went to the doctor or hospital for specific complaints more often than the general population during the five years leading up to their first symptom of MS. This suggests that underlying activity may be underway much earlier than when the first noticeable symptom occurs (read more about this study).

I bring this up because at the AAN this week, there were several presentations about a phenomenon called RIS – short for “Radiologically Isolated Syndrome.” A lot of smart people are collaborating internationally to take advantage of an accidental finding: namely, some people who get brain or spinal cord MRIs for any number of medical reasons are found to have MS-looking lesions on their scans. They don’t have any outward symptoms of MS, they don’t meet the definition of MS, but researchers tracking them have reported that over 5 years, about a third of them are likely to develop definite MS (RIS studies include abstract S37.008and abstract S37.003).

What researchers are trying to do is figure out if there are very specific MRI or other markers that will identify the one-third who will eventually get MS so that they can intervene early and reduce or prevent damaging disease activity. And that also means finding ways to identify the two-thirds that won’t get MS so that they are not subjected to unnecessary medications.

Finding predictive biomarkers was a big theme at the AAN, and I believe we’ll continue to see a lot of progress in this area, not only for predicting who will get MS, but also predicting who will have mild or aggressive disease, and who will do best with which therapy.

Bruce Bebo, PhD

Bruce Bebo, PhD, is Executive Vice President, Research at the National MS Society, and was previously a research immunologist focusing on the influence of sex hormones on MS. He is a driven and passionate Society volunteer, successful fundraiser and advocate, fueled in part by the fact that his mother had MS.

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Dear Mr. Bebo, I can’t thank you enough for your efforts in trying to alleviate the pain in the butt that is MS. Seriously. I was diagnosed with SPMS in April of 2012 and today, 14 May 2019, Tuesday morning about 11am, I am feeling very melancholy. Things are well, the sun is shining, I am in no pain, but godamn do I get sick of managing this condition 24 hours a day.

I once read an article from the NMSS (National Multiple Sclerosis Society), aka the Society, asking readers what they thought of as a cure for MS. I ended my response with a statement that being able to practice law once again and play basketball might be nice.

So even if myelin is repaired what do you think that will do? Give me back my ability to function like an able bodied person? That would be sweet, like winning the lottery sweet not like cotton candy sweet. Or maybe just prevent further disability? Enquiring minds want to know.

I still can’t believe what this condition does to the human body; it’s amazing, and totally a pain in the butt. Thanks again for all you do including an opportunity for me to exercise my soul. Keep up the good work, god bless and good luck.

Thank you so much for your research into MS. I was diagnosed in 2001, but I am sure I had it at least 10-12 years before I was diagnosed. MS has been overlooked too long! We are blessed tohave people like you fighting for us! God bless!

I was diagnosed in 1997. It’s been an interesting ride, and a ride I hope future generations don’t have to take. I am one of the lucky ones. I function at about 99% of my pre-diagnosis abilities, in part, because of my determination. I am on my third MS medication. I’ve seen first hand the advances that have been made in treatment and understanding MS over these past 22 years. I am very hopeful for the future and that this disease will have a cure. I will continue to fundraise for that cure. Thank you and all your colleagues world wide. Power on!

Very interesting studies. As a person with MS, I have spoken with a number of MSers over the years whose family members have an autoimmune illness - not necessarily MS. But, I’ve always believed there may have been a shred of compelling evidence between MS illness and autoimmune illness history in the family. Would be interested in understanding whether my observation has ever been analyzed.

Thank you for your continuing research on MS! It looks like great progress. My son diagnosed at 18. He is now 42. No medication taken. If you need someone to follow in your research, my son will be happy to participate. Only thing in the last 2 years he does not walk. Not sure if it from his accident which happened 2 years ago. But working on PT in patient Have to appeal in patient Physical Therapy. He has feeling in both legs.

I'm 55,have PPMS , JCV positive, on Ocrevus since 7/17, I got worse at faster pace on this DMT. Was better on Plegrity, now very hard walking &balance. Majority of scar tissue is in my neck, minor brain lesions. My doctor says it my disease progression& the Ocrevus is the only game in town for me. Just can't fathom that answer. Feels like I'm at a dead end. I willing to try almost any DMT trial at this point!

I am 73 in 2019 and was diagnosed with MS in 1993 based on a brain MRI following a car accident. I protested that I did not have MS and until 2009 had no real problems except maybe coordination but then began having episodes characterized by extreme body-fatigue, tingling in my feet and the nerve pain I already suffered as chronic (right foot, leg, rectum and under right breast) becoming uncontrollable. Many doctors later, I ended up at the Mayo Clinic in 2015 where, recounting my history, I recalled an incident in my 20's of tingling in all my limbs. A neurologist then said I had Myasthenia Gravis. I did not believe I could have anything so "grave"; it lasted a couple of weeks and stopped. I forgot about it! In my 30's I had a period of visual disturbance I described as trying to see through rippling water. An ophthalmologist said it was a virus which had attacked the optic nerve. I believe it lasted a couple of weeks as well. So now at Mayo, even after relating these and the "episodes" I'd had 5 or 6 of since 2009, I was diagnosed after 10 days of tests with "Radiologically Isolated Syndrome", did not have MS and was told to rest more and see a psychiarist. I had never heard about RIS but the name pretty much describes it and that was not what I had detailed to them. I had brought a binder of all my records and my own document of past details and current symptoms, everything labeled, partitioned and dated. I was extremely disappointed because I had researched my symptoms, finally believed I did really have MS as diagnosed in 1993 as "inactive, atypical or benign" and really needed some help. I went back to CA to Doctor Jody Corey-Bloom at UCSD and did the spinal tap - which she'd wanted and I'd refused - proving MS by their protocol (I think McDonald's?). I had been willing to do it at Mayo because of my faith in their re*****tion and expressed that, even asked for that! Finally, though, it was the ONLY thing they didn't do - and when asked why, said it could mean a lot of different things! So I walked away with a diagnosis of RIS as mentioned in the above article but which I have never seen referred to until now. The only fly I could see in my particular ointment was that I was not interviewed by the doctor I chose, but by an associate. I trusted "him" with everything "they" could possibly need to know including that I am maybe a little OCD and I think that was all "he" heard in the end. So, my advice to the medical community is to listen better to their patients - even if we are senior and have a lot of history. We are the ones in the bodies they are being entrusted with and might just know a few things! My advice to others reading this is to keep it short and sweet. You think you are doing a doctor a service by giving he or she everything at once but maybe, in a case like this, less is more. Let them ask the questions!

My doctor said one lesion on your spinal cord is like having 30 . He told Kevin have them all over my spinal cord and that is why I can no longer walk. I was DX with MS i2007. I was on a cane then a walker now a wheel chair. This was my first visit with this doctor.. The doctor I had since 2007 now dose MS research

I’m very happy to see some progress in treating and prevention research for MS, I have a dear childhood friend who is battling MS now and has been for some years. After reading this article I was shocked to see I have a symptom that has been identified as a early sign of MS, I have occasional blurred vision that comes and goes, Now I will discuss my blurred vision with my doctor. I have been tested in the past for neurological diseases in the past. That was the early 90’s. As a disabled RN I appreciate the research being done God Bless.

I had a one off hit of m.s in 2013, a month after taking voluntary redundancy from a great globally traveling role, like many from the site, I thought I would be spending the time looking for a new role but no, instead, 4 months in Frenchay hospital Bristol, and now having to attend the brain injury charity HeadWay twice a week and having support workers another twice a week so no chance of finding a new job! I am officially disabled, divorced (he couldn't cope that I was no longer the big breadwinner!) and unemployed! I hate this condition! AND the DVLA kept my driving licence!!! Sorry, rant over!

The health of your gut has been well known for years to play a major role in many deceases, including autoimmune diseases such as MS. I have had MS for over 30 years and am on a mission to repair my leaky gut to either put my MS into remission or stop the progression. Keep your studies on this link to the cause of MS for future MS sufferers.

THANK YOU so much for your research and advocacy on behalf of the estimated 2.3 million of us world-wide who suffer and/or thrive with Multiple Sclerosis. As you know, our stories or as varied as our individual course of disease.

I had my first symptom in 1984 when my left arm suddenly went numb while I was sitting at my desk at work. I rushed to my primary-care doctor and he told me that "the body just sometimes does that." You can imagine the expression on my face when he said that! I left and began my 16-year odyssey to find out why I was numb and tingly; why my body felt wet in different places, when it wasn't; why I felt like bugs were crawling all over me; and why I felt like electric currents were coursing through my body!

I saw my primary-care doctor regularly for referrals to neurologists. I saw several neurologists and ALWAYS gave them, what I now know are text-book symptoms! One of them determined that I needed immediate surgery for carpal tunnel syndrome.I praise God that I declined to do so. I saw all male physicians and each in his own way intimated that I might need an anti-anxiety drug like valium or an antidepressant like Prozac. In other words, they thought I was creating the symptoms in my mind. I received my diagnosis in 2000. I was relieved to have an answer to my problem. But the answer posed many, many new questions! I read books, pamphlets, short and long magazine articles, as well as scholarly research in peer-reviewed journals, etc. I read so much and asked so many questions, a couple of doctors asked me not to read as much!

I have administered Beta Seron shots for 19 years in July. I have gone from walking unassisted, through 2010, to using a cane, to using a rollator walker for the past 2 years. For the past 7 years, I have driven with hand controls. I have gone from teaching Master's and Doctoral-level students in a University setting to substitute teaching 2 to 3 times a month in middle school. I stay active in church ministries, community events, movies, theater, and social groups. I am interested in travel and recently visited Dubai and Abu Dhabi, U.A.E. The desert heat was hard on me and exacerbated my MS symptoms, but I determinedly never gave up! I flew 32 hours in 8 days and almost 16,000 miles roundtrip. Overall, I experience great pain 24/7. I am always fatigued, and only average about 3-4 hours of sleep per night. I am resolved to just power through my days and try to get the most out of my life as I can.

Concerning when MS begins, in my case, I was having MS symptoms in my early twenties--total paralysis in heat, and fatigues with exercise and heat, episodes of temporary blindness--none of which were diagnosed as MS. I was finally diagnosed at age 52 when I experienced toe drop and gait problems, l'Hermittes symptom, and finally total paralysis from the waist down. MS is such a mysterious disease masquerading as so many other diseases. Both my sister and I have MS and both of us couldn't get out of the bathtub after taking a hot bath for years before we were diagnosed with more severe symptoms. Before MRIs were used to find lesions in the brain, doctors used to put patients in a hot bath and if they couldn't get out, they had a clue that the patient might have MS. Sometimes, the old that doctors used to diagnose a patient's ailments are very wise.

I have MS and have placed multiple requests to enroll in studies, suck as the most recent using hyaluronic acid and previously regarding a clinical study out of UCSF but to no avail, no replies... Why is it so hard to return contact to patients WILLING to participate in studies? One step forward, two steps back? I'm sorry, I have NO faith in the promise of a CURE. Doctors, scientists, and pharma just appear to profit off our illness...They don't even talk to one another, let alone WHO they're trying to help. This is just so sad to me!